Sen. Carney introduces legislation to support cystic fibrosis patients

AUGUSTA — On Wednesday, Sen. Anne Carney, D-Cape Elizabeth, introduced LD 529, “An Act To Restore the Maine Center for Disease Control and Prevention Cystic Fibrosis Prevention Assistance Program.” The bill was the subject of a public hearing before the Legislature’s Health and Human Services Committee.

“LD 529 will ensure that Mainers with cystic fibrosis and their families can afford the care they need to manage this chronic disease, and will help those with cystic fibrosis to live longer and more fulfilling lives,” said Sen. Carney. “I am so grateful that a constituent of mine, Patty Morris, brought this issue to my attention. Patty’s adult daughter, Ali, has cystic fibrosis, and finding ways to afford to cover the costs associated with her diagnosis has been challenging, even with her private health insurance, needs-based disease-specific grants, and drug manufacturer copay assistance.”

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In the lungs, the mucus clogs the airways and traps germs, leading to infections, inflammation, respiratory failure and other complications. In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. Men with cystic fibrosis can have trouble with fertility.

The Cystic Fibrosis Prevention Assistance Program created by LD 529 would reestablish a pilot program that provided up to $3,000 per year to help Mainers with cystic fibrosis and their families afford necessary care that is not covered by insurance. Effective cystic fibrosis management can be extremely costly even for those with insurance coverage.

The bill faces further action in committee.

###